ME/CFS Questions and Answers – September 2025

This summary outlines key developments from UK parliamentary written questions and answers regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in September 2025.

Research Funding and Strategy

• The National Institute for Health and Care Research (NIHR) allocated £3.7 million to ME/CFS research between 2019/20 and 2023/24.
• The Medical Research Council (MRC) contributed £2.9 million in the same period.
• A new development award is being launched to evaluate repurposed pharmaceutical treatments for post-acute infection syndromes, including ME/CFS.
• A showcase event for ME/CFS and Long COVID research is scheduled for 6 November 2025.

Support for Researchers

• No dedicated ME/CFS research hub is planned; funding remains open and competitive.
• The NIHR Academy supports early-career researchers through fellowships, training awards, and mentoring, including the INSIGHT Programme and Academic Clinical Fellowships.

Health Services and Delivery Plan

• The ME/CFS Final Delivery Plan was published on 22 July 2025, focusing on research, education, and service improvement.
• NHS England will co-design a national template for services for mild and moderate ME/CFS.
• Exploration is underway for a specialised service for very severe ME/CFS.
• An e-learning programme is being developed to improve clinical understanding of ME/CFS.

Parliamentary Concerns

• MPs and Lords raised concerns about the lack of strategic research coordination and insufficient attention to severe ME.
• A joint letter led by John Milne MP calls for a national research hub and a meeting with the Health Secretary to discuss improvements.

Economic Impact

• ME/CFS is estimated to cost the UK economy over £20 billion annually, primarily due to lost productivity and increased care demands.